Update

Well, still dealing with some of the fall out from the brain problem. Which thankfully is a little brain problem and not a big brain problem. In the scheme of things, that is. It's getting better, and I'm taking less medication for it, but  it still bites me from time to time. I'm seeing a neurologist regularly. 

Also seeing the oncologist every three months. Not much to talk about there, except it's like homecoming when I go to my appointments. I like how the receptionist calls me "honey", and the lady who takes my blood knows which arm I prefer, and how the nurse knows the name of my dog. There's something sad, but comforting, in all that.

Finger tips and toes are still numb. My hair is still falling out a lot, but at least not enough that I look bald. It's thin and has a mind of its own. They tell me the hair thing will resolve. In a couple of years. 

The best thing these days is that I get to repay the kindness that cancer survivors showed me when I was diagnosed and going through treatment. They talked to me from a place of experience. They understood exactly what I was going through. As lovely as my friends are, they can't quite get it the way another cancer survivor can. 

So I am pleased I have an opportunity now to reach out to others who are where I was two years ago. They're scared, appalled, worried, and very sick. I hope I help them as much as others helped me. Cause I get it. I know that fear, intimately. 

It ain't over

It is ever gonna be OVER already? Sheeze, I'm tired of the cancer thing. It has ruled my life for nearly two years, and we still ain't done. 

I've said it before, but life keeps driving the point home:  Just because you're finished with treatment and the avalanche of surgeries have stopped, doesn't even begin to mean it's over. Heavens, no. 

Side effects of cancer treatment and the hellish reconstruction perch on my shoulder like they're my best friends. I remind myself often that it is better to deal with side effects than be dead. Which is what I would be if not for the chemo and surgeries. 

I'm the first to agree:  alive is better than dead. Alive with numb fingers and toes, a brain that betrays me at the worst possible moments, and a chest that looks like a road map...way better than the alternative. 

Don't get me wrong. I am GRATEFUL. My gratitude overflows. Daily, it overflows. And it seems wrong somehow to use "grateful" and "but" in the same sentence. But I'm going to anyhow. I am grateful BUT I'm tired of ongoing c*r*a*p.

Still...my life isn't bad. I worry a lot. I'm anxious a lot. I'm afraid a lot. But I'm alive, and in general I feel great.  I look normal, which is a blessing in itself. I don't look sick any more and I have a normal head of hair. 

That's pretty good, right? It's all good. But it ain't over.

To Nip or Not to Nip

Ya! What a truly bizarre place to be in life. I am faced with a decision of whether to TATOO nipples on my fake boobs...or not. 

How funny. How weird. How awesome. How...just plain strange.

A year post-mastectomy, my reconstruction is nearly finished. Except for the cherry on top.  How wonderfully inappropriate it is to be talking publicly about something as personal as my nipples. :-)

IF I decide to nip, do I want 2D or 3D tatoos? Oh Lordy, the places cancer takes us!

My plastic surgeon is adamant that I should have 3D tatoos done by his very own medical tatoo artist. Problem is, she is not employed by him so the insurance will pay $220 of the $800 charge. Ouch.

Another plastic surgeon says his nurse can do that tatoos, but they will not be 3D (which he naturally scoffed at). Almost the same, he said. I asked to see before and after pictures. Not even close. But the insurance will pay 100%.

Do I want realism that comes with a hefty charge (on top of my already crazy medical expenses of the last 18 months) or do I want "lesser"? Common sense says to go for the 3D...what's $600 over a lifetime of being able to look - and feel - more complete? 

Or maybe I could just do the rub ons. There's a thought. 

On the other hand, I'm feeling rather ambivalent over the whole thing. Maybe I'm not far enough away from the misery of breast cancer to really care. Maybe I'll care more this time next year.

But then again...there's something..so naughty...about being able to say I have tatoos! I'm not a tatoo kind of chick. But after what I've been through and at my age...maybe it's time to do something crazy. 

Like get tatooed nips.  Whatcha think??

You've Come to the Right Place.....

Folks tend to think that once cancer treatment is over and we begin to look normal again, that the hard part is done. The crisis is past. True. The worst part is over. But we’re far from done.

I had no idea the chemo side effects would dog me a year after my last infusion. Or that I’d still be dealing with issues from reconstruction.

August 1, 2012: Last chemo infusion

July 27, 2013:  Nearly a year later

Factoid:  Chemotherapy shrinks the brain. Seriously.  I have Post-Chemo Cognitive Disorder. A fancy term for the sad fact that cancer made me stupid. I used to be pretty smart. Now, I’m slower on the uptake. Confused. Overwhelmed.  I have to work way harder than most folks to reason my way through a situation. It’s causing problems at work. I work with a lot of really smart people. They'll have you for lunch if you can't keep up. I struggle to keep up. Some folks are quite understanding; some not.  

I’m surprised at how rotten chemo brain can make me feel. I’ve always placed a high value on intelligence. I like smart people. So not only did I get to enjoy the many indignities of cancer treatment and a mastectomy, but now I get an extra dose of daily mortification because I can’t always follow the conversation when multiple people are talking, I can’t find the right word to adequately express myself, I make mistakes, I can’t multi-task as I’m expected to in order to accomplish 12 hours of work in 8.  

On the other hand, I think I've done pretty damn well considering the circumstances. I'm not really stupid. I know that. But I can’t live up to my own expectations and that's really really hard on the self-esteem. But considering all that I've been through, it's amazing I have the wherewithall to be doing what I'm doing. I read recently that courage is that little voice that says "I will try again tomorrow". And try I do. I've never been a quitter. Although some days I want to. Seriously want to.

I’m not naive enough to think I can’t get fired over this. A doctor said to me recently “they can’t fire you because you have cognitive issues stemming from cancer treatment”. Oh yes they can. And they will. This is corporate America where the unspoken rule is “keep up or go away”. So I'm working double hard to make sure I don't lose my job OR my insurance. Now THAT would be a crisis. Like I need another crisis.


Spent most of yesterday doing extensive neurology testing. Just to be sure it’s really chemo fog and not something more sinister.  Yes, it’s chemo fog. The neurologist absolutely made my day when he looked me in the eye and said “You’ve come to the right place. We can help you.”

Thank you, God. 

How to tell a friend from a bum

I’ve discovered there is nothing like cancer to rid us of the riff raff in our lives.

And there is nothing like cancer to help us discover our true friends, like my friend Laura who scrambled me eggs post-chemo because it’s the only thing I could keep down. Or sweetly sat with me while my head was hanging over a trash basket waiting for the wave of nausea to subside. Or the friends who just do kind things without being asked. They just show up and do it. God love ‘em.

I think of my friend Susan who accompanied me to most of my chemo appointments. When I’d thank her, she’d look at me and sincerely say “it was nothing”.  Perhaps, but to me it was everything. I especially appreciated the picnic lunch she packed for one of our chemo adventures. We pull up to the cancer center, she opens her trunk, and takes out a picnic basket. It was full of wonderful homemade goodies that wouldn’t make me hurl.  I recall so clearly standing in the parking lot with her feeling so surprised and delighted at the absurdity of something so wonderful as a picnic in a chemo suite. That memory will stay with me forever because of the incredible thoughtfulness behind it.

I’ve been surprised – and not surprised – at the response I had from folks after announcing my diagnosis. I received support from very surprising places, and it made me enormously grateful. On the other hand, I received support in very self-serving ways from others. Never mind. I was so sick this time last year, I’d happily take support anywhere I could get it, no matter the agenda that came with it. Moving on.

I’ve also been surprised by the incredibly insensitive things some folks have said to me, although I’ll admit it did sometimes take a few minutes or a few days for the incredulousness to roll over me. Like the THREE people who looked me in the eye said to me “oh my wife/sister/friend died from that”.  Seriously?

Or the folks who said “at least they caught it early”. Like catching it early negatives the misery suffered for the last 18 months. The greatest benefit to catching it early is that it didn’t kill me. Yet.

And the one comment that always makes me blink twice “isn’t it great that you’re cured now?” Cured? For real? One is never cured from cancer like one can be cured of a sore throat. Especially if you have Triple Negative disease. I am not cured. I am in remission. Two very different things.

Still, insensitive comments and friends who did not behave as I might have thought they should really don’t make me angry. They make me shake my head or wonder why. Their attitudes are not my fault or my problem. However, I will admit to feeling a tad hurt that the ex-husband never once called to find out if I’d died yet. But really, after what I’ve been through, he seems like a life time ago.

My cancer experience has taught me many many things. One of the most important things is how to respond to a sick or grieving friend. I never say “call me if you need anything” anymore because I now know that puts the onus on the sick friend to actually pick up the phone if they need me, assuming they will actually put their pride in their back pocket to ask for help. I start thinking about what I can do to – in any small way – ease the situation. Dinner? Take out the trash before I leave? Check your mail?

And the one thing I can always be counted on for is a plate of homemade brownies. Brownies make everything better, according to my wonderful friend Trish who ministered not only to me, but to my dog. 

Friends don’t get any better than that.

Chemo causes stupidity

Apparently chemo makes you stupid. 

My oncologist and I had a good laugh over that today. It was the sort of laughter that brings tears to your eyes, but then you realize you are crying because its true.

It's true. Chemo made me stupid. Well, actually, it's officially called "chemo induced cognitive disorder". 

Some days it's worse than others. Some days, or hours, I feel absolutely normal. On other days, I realize it's taking me longer to complete tasks or I can't focus or drill down into a complex project. It always comes back to me, but in that moment...I feel supremely stupid and horribly aware that I'm not nearly as smart as I thought I was.

My oncologist said to me repeatedly today:  You are not stupid. You have ingested enormous amounts of harsh drugs and had more anesthesia than most folks have in 3 lifetimes. You are not stupid.

Ugh. The stupidity will last quite some time - often up to 5 years. So like any good 3rd grader who can't pay attention in class, I'm going to start taking my Ritalin like a good little girl. 

I feel way better that there is a drug that will counteract what the other drugs did to my brain. 

Disease free but not free of my disease

I’ve heard other cancer survivors say “I’m disease free, but I’m not free of my disease”. Initially, I thought they were referring to the emotional toll that cancer treatment takes on us. Now, I understand it’s both the physical and emotional.  

On occasion, I can get a little ticked at the whole thing. I’m done with treatment and surgeries…why am I still dealing with all the cancer crud?

Fatigue. I’m just freaking tired. A lot. Mornings are best, but I significantly slow down in the afternoons. Too often I make plans in the evening after work only to discover I’m too exhausted to find my shoes. That’s a bummer. I spent a year being sick and tired. Now I want to live. Except I’m too tired.  I worry that friends and family will become impatient with my constant refrain “I’m tired”.  I’ve read the fatigue from cancer treatment can last a year or more after treatment ends. Some say it lasts much longer. Egads.

Chemo brain. I’ve always been slightly forgetful and a tad ditzy, but I’ve never felt more stupid than since starting cancer treatment. During chemo, there were times I couldn’t complete a sentence. My brain just couldn’t find the words. I can speak in complete sentences now, but I am very forgetful. I’ve learned to compensate – my iPhone is my best friend in that regard. I take a lot of notes, take pictures, and record video on my phone to help me remember things. But hell…I’m in the prime of my life. I should be able to remember the TWO things I came into the grocery store for!

Neuropathy. I still can’t feel my toes. The numbness in my finger tips comes and goes. No pain, just a very odd sensation that reminds me of where I’ve been.

I should quit my bitchin’. I’m not in any pain except when I roll over the wrong way in my sleep and a fake boob gets in the way. And as far as we know, I’m cancer free. 

Except I’ve been having a lot of headaches.  I think it’s allergies, but who knows?  My type of cancer generally recurs within the first 3 years after treatment ends and it likes to hide in the brain. Maybe it returned at warp speed and is gleefully kicking around in my brain.  Maybe that’s why I keep forgetting to pick up Windex at the grocery store.

No, really…I think it’s allergy headaches. I live in the southern US where seasonal allergies are the norm.

It’s just allergies….right?